Getting Real About Autism: It's not a discipline problem or a diversity issue. It's a disability.Amy S.F. Lutz
On the third floor of the Kennedy Krieger Institute in Baltimore is a locked ward called the Neurobehavioral Unit (NBU). This unit is the last stop for kids with the most severe behavior problems – some are so self-injurious they must wear padding on their arms so they won’t bite themselves until they bleed; others are so aggressive staff members must wear helmets and chest shields during therapy sessions. At any given time, according to Dr. Lee Wachtel, medical director of the NBU, the majority of the kids on the unit are autistic – as is my ten-year-old son, Jonah, who was on the unit from January 17 to December 2, 2008.
Some of the autistic children are quite high functioning, but many are completely non-verbal, incontinent, and seemingly able to do little else than flap their hands or spin in endless circles. I think of those children every time I read the latest in the recent flurry of attempts to re-imagine autism as anything less than devastating, and wish the proponents of these theories could spend some time on the NBU. Maybe then they would realize how naïve and dangerous their efforts to minimize this epidemic actually are.
It might seem easy to dismiss the extreme examples, those blowhards who reduce afflicted children to undisciplined “brats,” as Michael Savage called them last July, or “junior morons,” according to Denis Leary in his book Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid. And I do trust that most people will hesitate to take Denis Leary’s advice on:just about anything. But the fact remains that an autistic child throwing a tantrum in a grocery store doesn’t look much different from a spoiled brat throwing a tantrum in a grocery store, and I can certainly imagine how comments such as Leary’s and Savage’s might reinforce the secret suspicions of those who have seen autistic children only during their most fraught and hysterical moments.
Harder to reject out of hand are those who mask their self-indulgent opinions as intellectual discourse, such as Owen Thomas’s post, “Autism, the Disease of the Internet Era,” which was featured on Gawker in January. Thomas re-conceptualizes autism as a metaphor for our alienated, internet-obsessed age, asking, “Are we all perhaps a bit autistic? Is the Internet turning us into robots, unable to express our emotions without mechanical help?:Needing to type ‘:-)’ to communicate our pleasure may give the tiniest hint of what the disease may be like.”
Suffice it to say: no, it doesn’t.
Thomas supports his philosophical musings with a claim very popular amongst the autism nay-sayers: “The consensus seems to be that we’re seeing more autism cases because we’re more primed to look for its symptoms. In other words, we see autism everywhere because we want to.” The idea that the astronomical rise in autism cases over the past decade has more to do with perception – with increased awareness, or allegedly expanded diagnostic criteria – than a legitimate increase in the number of affected children is echoed in David Safir’s editorial, “Hype Around Autism,” which appeared in 2007 in USA Today. Dr. Safir suggests, “In the 1990s the definition of autism began to change to include many children with a milder collection of symptoms:it is not helpful to artificially create an ‘epidemic’ by changing definitions.”
Thankfully, a new study by U.C. Davis should put this issue to rest. As reported in January by Scientific American, The LA Times, Web MD and many other sources, scientists have determined that changes in diagnostic criteria cannot account for the astronomical rise in autism cases in California. The study concluded that, “Of the 600-to-700 percent increase in autism reported in California between 1990 and 2000, fewer than 10% were due to the inclusion of milder cases.”
But the most troubling denials of autism come from a fragment of the autistic community itself: the neurodiversity movement. Profiled in several prominent publications, including Wired, The Wall Street Journal and New York Magazine, this group believes that autism is not a handicap, but just a different way of thinking – a philosophy that unintentionally legitimizes Leary, Thomas, Safir, Savage, and every other person who sets out to minimize the threat of autism. Because if some autistic individuals and their families don’t believe that autism is a disability, then why should anyone else? And if autism isn’t a disability, then why should the public extend any more patience or flexibility or empathy towards those with autism than towards those without?
As the parent of an autistic child, the inclusive tenets of neurodiversity are enormously seductive. Who doesn’t want to believe her child is perfect the way he is, as Kerry Cohen argues in her essay “What’s Wrong With This Picture?: My Autistic Son Doesn’t Need To Be Fixed,” which appeared in March here on Babble? But the central belief of the movement crumbles under logical scrutiny: if we could pick and choose attributes for our children the way we order custom cars from the dealership, would anyone even consider the autism option? Of course not. Because brown and blue are just different eye colors; curly and straight are just different styles of hair; but autism and typical development are not just different states of being. I can’t imagine any parent choosing the frustrations, limitations, and struggles of autism – not for themselves and certainly not for their children. Autism, to put it bluntly, is worse.
The autism rights movement grossly misrepresents the autism population. As I mentioned, many of the proponents of neurodiversity have mild forms of autism or Asperger’s Syndrome, and I in no way mean to diminish their pride in their accomplishments or their rejection of the disability label – for themselves. But by allowing this group to become the face of the “autism rights movement” (another word for neurodiversity), they are grossly misrepresenting the autism population. Dr. Wachtel estimates that “less than five percent” of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. “Most are not going to grow up to be Temple Grandin,” she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder – which makes sense to me, given Jonah’s level of functioning. Although his score on the Childhood Autism Rating Scale (CARS) places him just on the mild side of “moderate,” a recent assessment concluded his expressive language is equivalent to that of a two-year-old. He has no interest in his peers or siblings, and our house is a virtual firetrap because we had to install tamper-proof locks on every door and window to keep Jonah from escaping down to the busy road at the base of our driveway. Still, I thank God every day, because I know it could be so much worse.
There is one thing, however, which has been shown to dramatically improve the outlook for autistic children – early intervention. Some studies have shown that more than half of autistic preschoolers enrolled in early intervention programs are mainstreamed by kindergarten. Other studies have attributed significant increases in I.Q. and verbal skills to early intervention.
This is where neurodiversity is most dangerous – in the idea that early intervention should be eschewed as a rejection of our children’s differences. Cohen laments, “Our society has latched on to this:idea that we have to do something, and we have to do it fast. Organizations push for earlier and earlier detection. Pediatricians have been given new guidelines for screening children as young as twelve months for developmental delays. The suggestion is clear: A child with delays is unacceptable.”
But there’s an enormous difference between unconditional acceptance and unconditional love, one that has been completely overlooked by the neurodiversity movement. I love Jonah just as much and just as unconditionally as I love my four typically developing kids. But I would argue that no parents accept their kids unconditionally, typical or not. From the moment of conception, we play classical music in utero in an attempt to make our babies smarter, and the efforts escalate from there: Baby Einstein videos, language immersion playgroups, flash cards – and that’s not including the countless ways we socially teach our kids to share, take turns, speak politely and behave appropriately and responsibly. All children come into this world needing an education, some more structured and intensive than others, and denying an autistic child the therapy he needs under the guise of unconditional acceptance only hurts him. After all, isn’t our goal as parents the same for all our kids, no matter what issues they may have – to help them reach their potential, and to maximize the number of options they will have as adults? I don’t care if Jonah lives at home his entire life – as long as it’s because that’s his preference, not because he has no other choices.
Autism is a disability. And it is everyone’s problem. But, in all likelihood, Jonah’s only other choice will be a residential facility, and that will end up being a decision his father and I will have to make, not him. Because autism is not a discipline problem. It’s not a media circus, or a metaphor, or its very own culture. Autism is a disability. It is an epidemic. And it is everyone’s problem. Even if your own children aren’t on the autism spectrum, consider the risks to the children not yet born you will love over the course of your life: nieces and nephews, grandchildren. Right now, one out of 150 children is diagnosed with autism – for boys, who comprise 80% of the autistic population, the risk jumps to one in ninety. In other words, given relatively stable demographic and educational patterns, a boy born tomorrow is three times more likely to be diagnosed with autism than he is to attend an Ivy League university. An athletic scholarship is less likely to lie in this boy’s future than the desperate cycle of interventions and therapies, medications and educational placements that make up life for the millions of families supporting autistic children. And the lifetime cost of caring for those children ranges from $3.5 to $5 million per child.
But I’m optimistic that, by the time my children are old enough to have kids of their own, it won’t be such a crapshoot. As Irva Hertz-Piccotto, one of the authors of the U.C. Davis study, concluded, “It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California:research should shift from genetics, to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California’s children.” This is as loud a call to action as I’ve heard from the scientific community in the eight years since Jonah was diagnosed. I can only hope that, now, the vitriol directed against parents who express concerns about potential environmental triggers – yes, including vaccines – will cease, and people will begin to recognize that, as we fight against the rising tide of autism that, as Dr. Piccotto notes, “shows no sign of abating,” there is no room for us versus them. There must be only us.